Spring is a time for new beginnings and renewed hope. May this newsletter find you in good health and good spirits!
LOCAL EVENT: Voices from the Shadows
Smith College (Northampton, MA) will host a screening of the critically acclaimed video Voices from the Shadows, an hour long documentary following personal narratives of love, loss and hope in the battle against Myalgic Encephalomyelitis/Chronic Fatigue Immune Deficiency Syndrome.
Voices from the Shadows won the Audience Favorite International Documentary Award at the Mill Valley Film Festival, California in 2011. Special guest speaker Deirdre Tisdale will speak about her experiences with ME/CFS after the documentary, and a facilitated discussion will also take place.
WHEN: Thursday, April 3rd 7:30 – 9 p.m.
WHERE: Weinstein Auditorium, Wright Hall - Smith College in Northampton, MA
This free presentation is hosted by Smith College's Minority Association of Premed Students (MAPS) and is open to the public. Light refreshments will be served throughout the event.
If you are local, this is an excellent opportunity to meet others with an interest in ME/CFS. For more information, please see the event Facebook page.
The 2014 International meeting of the IACFS/ME held on March 20th-23rd in San Francisco was a great success. Researcher/scientists, clinicians and patients saw reports on the latest findings on ME/CFS and Fibromyalgia. There were over 40 papers and 75 posters presented by researchers and clinicians from 13 countries. Areas of interest included immunology, virology, epidemiology, exercise physiology, brain research, and pediatrics, plus treatment studies, bio-banking, case definitions and medical education. A longer summary article on the conference findings is in progress.
During the IACFS/ME Conference, the International Association for CFS/ME announced that it will soon publish an updated Primer for Clinical Practitioners. The 2014 version contains an expanded section on the severely ill, plus new information on the pathophysiology of the illness. As soon as possible after the new Primer is published, our Association will make it available to members for download at no cost. The Primer will also be available on the IACFS/ME website.
New FACEBOOK Page
As previously mentioned, our Association launched a new Facebook page earlier this month. Although our website and newsletter will remain key sources of news and information about the Association, our Facebook page will provide yet another avenue for those who wish to stay connected and informed. To follow us on Facebook, please click here: Massachusetts CFIDS/ME & FM Association Facebook Page. Once you’re on our Facebook page, be sure to click the “Like” button on the top of the Page.
Please note: If you are not a Facebook user, you will still be able to see our page and view our videos. (You just won't be able to comment, share, or "like" the page.)
SURVEY: Fibromyalgia Patients: “Tell Us What We Should Know”
The National Pain Foundation (NPF) has announced that it is conducting an online survey asking Fibromyalgia patients about the quality of their treatment and whether or not the drugs they've taken are effective. The NPF is building a global digital community of pain sufferers and their families to transform how pain is understood, assessed and treated. Learn more.
SURVEY: ME and CFS Mortality Study - Leonard A. Jason, Faculty Advisor
DePaul University's Center for Community Research is currently recruiting respondents for a study on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) mortality. The medical community and relevant government agencies need to be informed of the frequency and circumstances of deaths resulting from having ME and CFS. The University is looking to recruit surviving family members, friends, and/or caregivers of individuals who had been diagnosed with ME or CFS and are now deceased. Their intention is to document the experience of these deceased individuals, and the experience of their family and friends, to improve knowledge of ME and CFS and to help those individuals who are currently suffering from the illness.
“If you know someone who passed away after being sick with ME or CFS, please participate in this important survey. If you can distribute this request for study participants to all whom you know in the ME and CFS communities, please do so. This research can help to make the disease(s) of ME and CFS less invisible for patients and their loved ones.
Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview. The online survey portion is expected to take up to 1 hour of a participant’s time. Participants must be at least 18 years old.
Please note that this survey is not simply about people dying from ME/CFS (although it includes them); it's about people who have been diagnosed with ME/CFS and have since died.”
Mom Needs to Lie Down is a short (11 min) video from Canada that might help friends and loved ones better understand what it's like to live with ME/CFS. Although the video doesn't touch on the most severe forms of the illness, it does explain PEM and addresses the isolation and loss of purpose that many patients experience. View the video.
How ME Is Being Diagnosed - Dr. Charles Shepard offers a pragmatic approach to diagnosing ME in this brief (10 min) YouTube video.
MECFS Alert - Llewellyn King, host of the PBS television show White House Chronicle, is a staunch advocate for patients in the ME/CFS community and the co-producer of the MECFSAlert video series. His YouTube channel has all 58 episodes available for viewing. Earlier this month, Mr. King wrote an article for the Hearst-New York Times Syndicate entitled The Strange Case of the NIH and an Elusive Disease. In the article, he calls for a “congressional hearing … to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them."
When there is research, there is hope for an improved quality of life. Here are links to some of the most recent research news that we have found:
“May 12” Funds for Research
Our Association will once again be collecting Funds for Research in April and May. Our theme this year is “Even if you can’t demonstrate, you can still contribute!” Due to the sad lack of government funding, much of the wonderful new research being done now is privately funded with contributions both large and small. We can all help! Watch for more details coming soon.
FDA’s Draft Guidance for Industry
Earlier this month, the FDA announced the availability of a Draft Guidance document entitled "Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Developing Drug Products for Treatment." Once finalized, the document will assist sponsors in the development of drug products for the treatment of CFS/ME. While it is still in draft form, interested persons may submit electronic or written comments about its content for consideration when the document is finalized. View the draft.
Why the Lighthouse? (on our Website and Facebook page)
“There is a ... fatal spot upon the coast of Massachusetts, where many a brave heart and many a gallant ship lie buried in one common grave ... and it is really very remarkable that this most striking omission...has not before been observed." These words, written by a Civil Engineer in a report to Congress in the mid-1800's, resulted in construction of the Sankaty Head Lighthouse located on Nantucket Island in Massachusetts.
For patients dealing with CFIDS/ME & FM, the lack of knowledge and education in the medical community is also a “most striking omission.” All too often, patients are left adrift with no idea where to turn. The absence of recognition and understanding by the general public only serves to make the challenge of living with these illnesses that much harder for these “brave and gallant” souls.
Since 1985, the goal of the Massachusetts CFIDS/ME & FM Association has been to educate and advocate for patients whose lives have been devastated by these illnesses. Much like the Sankaty Head Lighthouse, we exist to provide the assistance needed to help patients find their way.
If you like receiving this free newsletter every month, please consider supporting our work by becoming a member.
We also welcome new volunteers, especially people with basic computer skills who would like to learn something new. You don't need to live in Massachusetts, or be ill, to be part of our Association! We welcome healthy family members and friends, as well as patients, as both members and volunteers.
Please pass this newsletter on to family, friends, and fellow patients! If you are receiving this copy from a friend, you can sign up to receive the newsletter yourself.